What a week! After reading my last post, I realized that it may have come across a little negative. My intention is never to depress anyone. I have been really surprised at how hard this has all been for me to swallow. It is one thing to be-bop along, thinking you know what is wrong with your child. It is another thing altogether to be hit with the harsh reality that there is something wrong. Not only something wrong, but something that cannot be fixed.
As always, there are so many blessings. I had dinner tonight with "Mito Mom", the new phone friend I told you about in the previous post. I don't want to mention her name here in interest of her privacy, but I think that name is very fitting. I envision the whole "super hero" thing when I say "Mito Mom", and to me, she is a super hero. She has five children and a husband with a mito disease and she manages it all so well. I have learned SO much form her. I still have along way to go, though. She brought her little girl and she and Clara had a ball! They did very well while we sat in Chili's for 4 1/2 hours!
I guess the hardest part of this whole thing for me is trying to look into Clara's future. To look at her, she really looks like a healthy little girl with a funny walk. The downside to learning so much, though, is that I am also learning just how ugly this disease is. The more I read, the more I cringe. It has been very easy for other people to say "It's going to be okay", and while I pray that is the case, this thing can get very ugly. Our prayer is still for complete healing. In the meantime, we are going to manage this thing the best we can. We are still in the process of trying to get her supplements. One has to be ordered through a website and is VERY expensive and the other one we are still waiting for the prescription to come in the mail. The hope is that these will greatly increase her energy and reduce her pain. We are going to work very hard to keep her healthy, as mito kids do not do well with sickness, manage her blood sugar, and keep her from getting too hot or too cold. We are going to try to avoid anything that causes her to use an excess of energy. From what I know so far, that seems to be the most important thing. Mito Mom described it as an "energy budget" and you have to be careful how you spend it.
Emotionally, I think Jeff and I are started to "deal" a little better than we were three days ago. There are still so many questions we want answered. It is just going to be a process.
Thank you to all of you who have stuck with us during this long diagnosis process. We appreciate your prayers, phone calls, cards, and encouraging words.
Cyber Monday Newsletter
1 hour ago